This sure wasn't in my plan, but it is my journey!
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Monday, October 31, 2011

I had the
greatest surprise ever this week; my daughter in law, single-handedly drove my
four grandchildren, seven hours, in her min-van, to my house to celebrate the
oldest one’s sixth birthday. If you do the math, you will realize that she
drove four children under the age of six, just to come and see me. She is one
brave woman and I cannot thank her enough. It was a great week full of baking
cakes, making Halloween decorations and sewing headbands.

The kids
were awesome and the week was a huge success. My daughter even managed to bring
my grandson up for an overnight; it was the very first time that I ever had all
of my grandchildren under the same roof, at the same time. And guess what? I
didn’t even manage to get one picture of all of us, all together, in the same
frame. Guess we will have to shoot for another visit!

While they
were here, Aubrie, four years old, brought along the consequences of an
impromptu haircut, from her neighboring four year old friend. A few weeks
before their visit, Aubrie’s little friend whacked off the front of her hair,
right down to the scalp. Her mom then took her for a “real” haircut. Since the
girls are aware of my leukemia, and know that children can also get leukemia
and lose their hair, Aubrie reluctantly allowed over ten inches of her hair to
be cut, in order for it to be donated to “Locks of Love.” We actually sent it
off in an envelope while they were here.Her haircut is adorable and her mother
has made the cutest ever headbands to help hide the front part of her hair.

The
headbands are so stinking cute; I have found that they also help to cover up my
ever thinning hair, as well. I guess I can thank Aubrie for a new look! I will
be posting the etsy link as soon as she gets up and running.

Thanks to
the generosity of a friend and fellow dancer, my grandkids were able to spend a
fabulous day at Disneyland while they were here, too. What a bright light in my
life that week was; thank you, Sabrina!

I think that
I have finally recovered from all of my excitement and shall be posting updates
on blood work and other such things as the week progresses. Thanks for all of
your continued prayers and support.

Wednesday, October 26, 2011

Life has
been crazy for me during the past two weeks. The craziness began with a trip to
the Paradise Dance Festival. I competed for the last time this year. I came in
second overall and wish that I had danced better, but that is nothing new. As
much as I hate to admit it, I am afraid that this damn leukemia is just going
to get its’ wish; to slow me down.

I have been
fighting tooth and nail to live my life just like I was before I was diagnosed
with leukemia. Dancing was one of the things in my life that I was trying the
hardest to hold on to. I won’t stop dancing, but I know that I need to stop
competing; at least for now. I just cannot count on feeling good, often enough
to practice on a consistent basis, and I never know how I am going to feel when
the competition day actually arrives. Not to mention, the competition itself;
it has become increasingly exhausting. I do really great for the first four
dances, but my energy wanes greatly over the next four. Not to mention, I am
completely wiped out by the time the weekend is over. So, for now, I will
continue to practice and dance when I am able and will have a tentative plan to
compete next May, in Fresno.

Wednesday, October 12, 2011

Why is it
that it seems as though the delete button only works when you do not want it
to? You know those times when you create the perfect resume, school report or
email and it just suddenly disappears; yet, when you maybe say something that
you don’t mean, or your words do not come out just the way you planned, they
are sent or said out into the universe, never to be forgotten or returned.

I am sure
that we have all said or done things that we would like to delete, but as
Murphy would have it, the delete only seems to come into play when we least
want it to. I wish that I could delete my leukemia, yet I would not wish to
delete the friendships and knowledge that I have gained from having it.

I am sure
that there are many things that I have done that I wish I could delete, but
would I want to delete the lesson learned? No, I would not. I guess that the
best case scenario would be to learn the lesson the first time and not have to
repeat it; therefore there would not be a reason to hit “delete.” So, I guess
that the delete button is really nothing more than a reminder that good things
do often end and to embrace the good, forget the bad and when all else fails
just hit; Delete!

Sunday, October 9, 2011

I am relatively
certain that another thing, which cancer patients have in common, is the
feeling of despair. For me, it is a feeling that comes and goes. Many days I
forget that I even have leukemia; I feel pretty darn good and am able to keep
up with the tasks, of the day, at hand. Other days, even the simplest things
can seem daunting; such as making the bed or doing a load of laundry. On these days,
I just force myself to carry on. I make myself put the clothes into the washer
and hit start; I drag myself to the dryer and force myself to hang up the
clothes; often that is where they stay; waiting until tomorrow or the next day
when the sun is shining brighter in my world, and I can and will carry them to
the closet.

I don’t know
what brings on the feeling of despair; it could be my medication or the fact
that I have just been pushing myself too hard. It could be the fear of my
cancer becoming stronger and me becoming weaker. It could be the financial and
emotional burden upon me and those that love me. Or maybe, I just woke up on
the wrong side of the bed. Whatever the cause, I am glad that I realize that
this feeling is just a part of having cancer; and that this feeling is
temporary.

Throughout
my life I have lived through situations that have caused despair and always
come out on the other side. I am generally a person full of sunshine, hope and
optimism with energy to spare. I think that part of the problem is accepting
the fact that my “normal” has been
changed; and I do not like that change. I do not like my new “normal.” Does
that mean that I am no longer full of hope and optimism; no, it just means that
some days it is a little more difficult to see the sunshine.

Saturday, October 8, 2011

Thanks to
all of you that purchased my leukemia and cancer bracelets. They are in the
mail, and they are beautiful! Hopefully you will all like them. I have had
several people that are actually sending the links to friends that are having
birthdays and letting them chose which style they like. Thank you for doing
this! I will continue to sell the bracelets as long as there is an interest and
desire.

Thursday, October 6, 2011

I am sure
that there are many, many things that cancer patients all have in common, but
one thing that I am sure of, is that the very first thing that we all have in
common is total and complete shock. No one expects to hear the words, “You have
cancer.” Sure, we all logically know that cancer, somewhere in our bodies, at
some point during our lifespan is a possibility; however, few of us actually
believe that it will ever happen to us. Cancer is something that happens to
other people, not me.

Most of us that
are walking around knowingly having cancer, walked around for quite some time
incubating cancer cells, without us even knowing that we were ill. Sometimes
people become ill from their cancers, other times we are simply blindsided by a
routine exam. I really do not know if there is a better way to get the news or
not, but being told you have cancer when you really didn’t know you were sick
is a real shocker. I know some people go through months and months of testing,
knowing that something is amiss, when they finally get the news, so maybe for
them an answer of some sort is better than the unknown, but I truly believe
that regardless of the delivery, every one of us was shocked.

Life as we
once knew it is gone forever. Our lives’ are not over by any means, they are
just going to be different; they will never be the same. For every single
person that hears those three big words, “You have cancer,” a new journey
begins. While many of us will share similar treatments, medications, side
effects and results, we are all different and our experiences will all vary. We
can share our stories and experiences with others, in hope to help and to learn
from each other. Cancer is a six letter word that will change your life;
forever.

Monday, October 3, 2011

I suppose that since it is National Leukemia and Lymphoma Month, now would be a great time for me to begin freaking out about my medical insurance that resets on January 1st of every year. Since I have been self-employed, in one form or another for most of my adult life, I have never had the good fortune of being included in the benefits of an employer’s health insurance plan. I have had to purchase my own health insurance, which I have done through Anthem Blue Cross, for the past thirty years. Fortunately, I have had the wither-all and means in which to do so, despite the high rates and low benefits that have been available to me.

I have always figured that some health insurance is better than no health insurance at all, and since I have always been in great health, a catastrophic insurance plan has always been a good choice for me. A catastrophic health insurance plan is literally just that. It does not pay for the small medical instances such as a sore throat, flu of urinary tract infection, but does cover larger instances such as appendectomy’s, or in my case, cancer. The biggest drawback is the extremely high, yearly out of pocket expense. Last year, needless to say, I met that expense in one fell swoop; when I was admitted to the hospital, after being diagnosed with leukemia. Normally, this would not be an issue; I would have been hospitalized, cured and sent home. I would have had to pay one, great big, out of pocket insurance deductible. I would have recovered, picked myself up, dusted myself off and gotten right back to work!

The issue arises from the fact that my type of leukemia is not curable, only manageable, which means, extremely high medical costs that reset on a yearly basis. I will need to come up with a $5000 deductible at the first of every year for the rest of my life. This in addition to the many other out of pocket expenses and extremely high cost of my medication, has kept me up many a night; worrying.

I have been very blessed with random and surprising donations, and am extremely grateful to all of you that have helped me in my fight thus far. I have never been very good at asking for help of any kind, but I am afraid that I have been humbled by leukemia. I have found a few writing gigs and some sewing and cakes that need making, but I am afraid that none of these are yet profitable enough, to keep my head (and body for that matter), above ground for long. I have found some really cute bracelets that are cancer/leukemia related and I am going to try and sell them as somewhat of a fund raiser. They range in price from $15.00 to $18.00. If you simply wish to donate, there is a place to do so in my right column. Desperate measures require desperate times. Of course, I am also willing to consider any and all other options or opportunities offered to me.

For those of you that can and do, my humblest thanks. For those of you in the same boat, or even one with more holes in the bottom of it, you have my emotional support and empathy. And to all of you that just read and support me through encouragement and kind words, please know that I am eternally grateful.

A cancer diagnosis is difficult for anyone to cope with.
Harsh cancer treatments, like surgery and chemotherapy, take a toll on the mind
and body. Cancer affects both the physical and emotional wellness of cancer
patients. Support networks help them untangle their jumble of fears,
frustrations, and feelings.

Many deep friendships develop through cancer survivor
networks. Family members provide an important support system, but unless they
have experienced cancer themselves, their understanding is limited. They also
have their own emotions to deal with.

People who attend cancer support meetings understand each
other, because everyone is going through the same thing. Talking to someone in
a similar situation is reassuring for people with cancer. Groups make it easy
to get and give support and advice, and to gain a fresh perspective. The
members share personal stories and celebrate life together.

Cancer support networks come in the form of community groups
and online networks. They are typically free to attend, and they usually
welcome anyone affected by cancer. Community groups often meet in hospitals,
churches, civic centers, or member homes. Online networks allow members to
connect through discussion boards, chat rooms, blogs, and electronic messaging.

Friendship and emotional support are major functions of cancer
support networks. Through support groups, cancer patients and survivors are
reminded that they are not alone. While each cancer experience is unique, every
patient must deal with treatment and care options, side effects, and numerous
decisions. Through cancer support groups, members help each other cope.

In addition to camaraderie, cancer support networks provide
practical assistance. Some groups provide hats, wigs, scarves, and turbans for
clients undergoing chemotherapy. Many offer free transportation to meetings and
doctor appointments. And all support groups provide valuable information and
resources to help people cope with treatments and recovery.

There is a cancer support group for everyone. Some support
groups are designed for people touched by certain types of cancer. For example,
“Reach for Recovery” supports women with breast cancer, and “Man to Man” offers
prostate cancer support for men. The Cancer Survivors Network, an online
community sponsored by the American Cancer Society, is open to all cancer
patients, survivors, families, and friends.

Whether someone is struggling with a treatable cancer like
non-melanoma skin cancer, or they are dealing with a rare disease like
mesothelioma lung cancer, cancer support networks are invaluable in every phase
of the disease. Emotional support is just as important and medical care for
people affected by cancer. The positive, optimistic outlook of cancer support
networks can make the cancer experience a lot easier to cope with.

Sunday, October 2, 2011

All is well
in my world, but unfortunately I cannot say the same for my precious
granddaughter; it seems as though her little friend decided to try out her hair cutting skills on my granddaughter’s hair. My granddaughter is the little
girl that never wanted to cut her hair; she did not want a haircut, no matter
what. Her hair was long, well below her waist. It was beautiful!

It is
amazing to me that even at four years old peer pressure can get to you. Her
friend started out by cutting her own hair; she said that cheerleaders didn’t
have bangs, so she didn’t want bangs either; so one snip, and no bangs. Aubrie
was next. The problem with this is that Aubrie didn’t even have bangs; her hair
was all one length. Long beautiful hair; cut to the scalp, all of the way across
the front of her head; bangs and half of the front of her hair gone. I am
guessing that it took more than a snip or two.

My heart just breaks for her; she is the
girlie, girl; the one that always wants her hair done, the beads on and wears
some sort of catawampus outfit every day. She likes to be all dressed up and
loves the Glitz. She now looks quite
silly with all of this long hair in the back and literally nothing in the
front.

He mother
showed her a picture of a little girl with leukemia, just like Nana has; only
this little girl had no hair. She asked her if she would like to help that
little girl look pretty and give her some of her own hair; her answer was
simple and straight forward, “No.” Did I forget to mention that she is also
very decisive?

Despite the
“No,” her mother took her for a haircut. Luckily she did have enough hair to donate to locks of love and her hair does look really adorable; eventually I
think that even she will begin to like her new haircut, if for no other reason
than it will no longer hurt when it is brushed.

Important lessons in life rarely come easy;
her parents had just had the conversation with her about being her own person.
They told her that even if her friends tell her to do something, it doesn’t
mean that she has to do it; especially if it makes her uncomfortable, or she
knows that it is wrong. Talk about timing; looks like she learned this lesson
the hard way.

Leukemia Survivor (CML); I Am Dancing My Way Through

- See more at: http://info.wegohealth.com/thank-you-joining-health-activist-speakers#sthash.S1wMKrx4.dpuf

DISCLAIMER

All information is based on my own personal experience and is for informational purposes only. I am not a medical doctor or medical professional. I am not giving advice, I am merely sharing my treatments and experiences.

I may generate ad income and/or accept advertising ads or links on my blog; at my discretion.

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All material within "CML Leukemia" blog are the sole intellectual property of the author. Any use or reproduction of these materials is strictly prohibited without the expressed written consent of the author.